Sunday, May 25, 2014

Institutionalization Followup

This article is a great counterpoint to my post yesterday about the practice of placing significantly disabled children and adults in large institutional facilities. You might say that Ellen Petroff’s parents present the other side of the argument … that their daughter, now 44 years old with multiple disabilities and health problems … needs 24 hour care from a very specific set of people which they can’t conceive her receiving anywhere but where she has been for 30 years. New Jersey's Developmental Disability program definitely needs to answer their questions more specifically than to say, “We’ll find a place”.

However, I think the article and everyone in it is missing a few basic truths. For one thing, moving anywhere after 30 years in one place is scary and risky for anyone, even those who don’t have disabilities. For another, I see hints that some of Ellen’s health problems might be the kinds that develop later in life, due to age but also to inactivity and maybe slightly complacent health care. Was she hospitalized so many times because her medical problems are just that severe? Or, could some of them have been avoided with slightly better, more creative health care? How do we know that her health won’t improve moving to a smaller group home, closer to her family, maybe with new aides and doctors able to approach her care with a fresh take?

Finally, I think the Petroff family’s concerns point to one of the insidious affects of these highly centralized, sheltered, sequestered institutions; they breed a sense of dependence and indispensability. Ellen’s parents can’t conceive of anyone else looking after their daughter. They may be right to worry, but that calls for especially thoughtful preparation, not reversing the trend towards closing institutions and helping disabled people live integrated lives in their own communities.

I do think choice should play a role here, but who’s choice? Can Ellen make a meaningful choice? How relevant are her parents’ wishes at this point? Plus, there’s the specific choice to stay where you are or move, and then there are the additional choices that could open up for Ellen if she chose to leave the institution.

This is a transition period, and transitions are always hard. That doesn’t make them wrong.